Wednesday, December 31, 2008

Another Robert update

Been trying to keep the blog in a place where it could mine the intersections among poetry, disability, and motherhood--hoping it's not degenerating into simple diary.  The last few posts have been a bit dire in tone--although that's more of an exploration of intersecting themes with poems.

Robert's episode of being trapped in our home/residential elevator this AM, the power having gone out suddenly due to a minor tree limb falling on the wires on our street has really pushed me a bit too far.  We've been unable to get ourselves on Pepco's emergency list because their empathy for the disabled is a bit low.  Because our bit of the grid only serves about 100 people, we are low priority for re-servicing.  Sometime tomorrow morning is the best I could get, despite my description of Robert's disabilities.  [I'm logged on to a neighbors WiFi--someone who apparently does have power; my lap top batter has about an hour left].

You know, I'd rather be in Jeffers' gaze, looking down on the city, rather than be in the city with its frenetic, bright lack of compassion and concern for the individual.  I so much want to move back to Vermont, but the mechanics of such a move, the separation from friends, the job interruptions, the school issues.  Well.  Sigh.  Vermont and the northern New England states have just launched this impressive progressive coalition in elementary and secondary education--the link to the article is at work; otherwise I would post it.  

Anyhow, a Robert update: doing well on biotin therapy, looking ahead to the ability to get a blood test for a gene-linked basal ganglia disorder developed in Israel & available clinically in about a month or so.  But I still feel he faces enormous, thoughtless discrimination in his public school: no technology for you kid!  It's a waste of resources to give you options and chances.  As Pepco said this morning, they prioritize repair to restore power to the greatest number of people first, so my son's disabilities are a "too bad" kind of thing.  And that's the school's attitude: the needs of the individual are immaterial when larger cohorts of students have needs.  There isn't any way to change these attitudes and positions.  

One of the interesting themes in Robinson's Jeffers' poetry is that tension between the individual and an uncaring, myopic, and brutal collective society.  And that's what I've come to feel our urban areas are: myopic and brutal.  I don't know that Jeffers postulates greater compassion for rural areas--he doesn't discuss warring factions of society--it's the individual against the machine he explores.

The societal machine is, of course, helpful.  There are compassionate parts of it--networks of friends, close-by services (when there's power or water and the infrastructure isn't going to hell), a concentration of hyper-specialized doctors.  But it's been my dream to squeeze what I can out of this--figure out what's wrong with Robert, what our treatments are, achieve some stability, and then go somewhere else where the overhead isn't as high, the stresses are lower.

Our next step with Robert is to test him for the gene-linked bilateral striatal necrosis that a research lab in Israel has been studying.  Our hyper-specialized neurologist at Kennedy Krieger, who deals only with rare and unknown neurological conditions, feels that it looks so much like one of these three necroses scientists have ID'd, that negative testing for the other two has got to give us a positive for the third.  Having been down this diagnostic road so often--it must be this!  Test.  Nope, not that--I am wary.

We're approaching Israel last because KKI has had little luck in getting blood samples through Israeli customs.  The Israeli doctor has said that the test has moved from research to clinical testing protocols, and the clinical test will be available by late February/early March.  Whether this means they can ship the test to a U.S. lab and we do it here, or whether that means we'd have better luck getting the blood samples through Israeli customs is unclear.  And there's always the caveat that Israel seems bent on starting WWIII right now.  

But our political connections offer us the chance to request transport of the blood samples by diplomatic pouch.  Not a given or a sure thing, but a good chance the request will be considered.

The place I can no longer be in is this one: living in a state (Maryland) in which social services are breaking down, nothing is guaranteed no matter how severe my child's problems are (including nursing support so I can hold a job), and compassion is not available for individuals.  This has been my adopted home for a long time, but I just can't really imagine that my home state (Vermont) isn't more compassionate, more sane, more humane.  Maryland is just a hellish nightmare.  That or Canada.  

I'm glad Obama's coming in, but this country is so unlike the one in which I spent my childhood, I just can't imagine he can undo years of petty, nasty disregard for humane society and the needs of individuals.  Whatever he does with healthcare, the ending for Robert will not be happy: Obama, too, will be driven an attempt to do the best for the greatest number of people, and the anomalies, like my son, will just be told, well, too bad for you--we feel your pain, here's a shoulder to cry on.  I honestly can't imagine any other outcome.

4 comments:

Elizabeth said...

I wish that I was with you tonight and we were both pouring ENORMOUS glasses of champagne. And toasting to...what?

jeneva said...

Well--toasting to the BCC rescue squad for freeing Robert from our elevator. Our power went out this morning, and the elevator's backup system failed (supposed to return the car to the closest floor). So we had to call 911.

And toasting to life and friendship as well. Do you know that old popular poem, Desiderata? I read it to my kids on Christmas Eve. This is the way it ends:

Therefore be at peace with God, whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life, keep peace with your soul.
With all its sham, drudgery and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.

peter said...

loved your post on your son, the city, and poetry..especially liked your reference and use of Jeffers...you might be interested in looking at www.jeffers.org...we have annual conferences on Jeffers that include poetry readings...nice folks

jeneva said...

Thank you, Peter, for your kind remarks. I took a quick look at www.jeffers.org today and have bookmarked it to explore it further. My interest in Jeffers was sparked by Mark Jarman; I note he's on the board. I took a seminar on Jeffers with Jarman during one of the residency sessions at my MFA program. I've found that, since then, Jeffers is one of the poets to whom I turn most often. Maybe it's the times--but the poetry really is great.